Leak Troubles - Need Support

So here I go again. Thought we had my leaks under control. But at 4:00am this morning, I woke up covered in it. All over my bed too. I went to the bathroom and left a trail of it all over the floor. Then, trying to get all my clothes off, it went everywhere. Finally got in the shower and felt better, but I still had the mess to clean up. I haven't been back to bed. So it's back to sleeping on the couch. They're leather and easier to clean. I'm getting really tired of this, guys. It's bringing me down. I just need support right now and thought I would reach out. Pammer

Hi Pam,
Sorry to hear you still have problems. Have you tried the white linen tape from the Dollarama store? It should at least diminish the extent of the leak.
You might also try a dollar store shower curtain under the sheet. See if any of the medical supply stores carry "Strappal" - it really sticks and the skin will start to irritate before it starts to really leak. If you can't find "Strappal" in Midland, call Tracie Kraft at the medical supply store in Pickering.

http://www.themedicalsupplystore.ca/

and see if she can send you some.
Also, get a sample of Brava "elastic tape" from Coloplast. Good luck.
Ed

Thanks for the advice. Chat soon. Pammer

Hi Pam, sorry to hear about your leaking problems. I have had my share of leaks too.
I purchased a mattress pad that is leak-proof for my bed (Bed Bath & Beyond). I also purchased
a smaller one for when I travel to stay with family. A good idea is to keep some wet wipes and a towel by your bed in case of a
leak. The towel will at least get you to the bathroom without creating a mess all over the
floor/carpet. Though I don't use the tape, others on the site say it works wonders to prevent
leaks. Do you have a good template that is the exact size of your stoma? If not, get one cut
because if it is too big, this can be a culprit for leaks. Once I got the right size template made, I have not had a leak since. I sleep on my side as much as possible so the crap continues to roll downhill. If you sleep on your back, this can definitely cause leaks. Keep your chin up as it will get better. Penguins7

Hi Pam,

I know this might be overly obvious but a change in products might help.
Also, do you do any activities on a regular basis that cause you to sweat? That is the only time my leak factor increases. Summertime is the most difficult time of year for me because I'm fairly active and I'll be darned if I sit around because of "this".

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Aww Pammers, I sure hope you are doing better, dear. Xoxo .... This old Osty sis of yours has had a few leaks on occasion too, not often but some of my friends have them nearly nightly due to different problems like "weeping skin" .... or allergies to the tape..... or wafers too thin or wrong size not fitting snug enough around the stoma, etc....
One Osty sis has less clean up in the bed since I suggested she just put an old shower curtain between her mattress and her fitted mattress pad. That saves the bed itself, isn't so uncomfortable to lay on, and also to keep a towel next to the bed in case that happens you can grab your towel and hold it against you, dear, and make your way to the bathroom without leaving a little trail .... once you're in the shower it always feels better, let that warm water feel good washing your skin and just try to relax.
Remember before you re-apply your fresh pouch, make sure your skin is completely dry, put a big wad of toilet paper over the stoma and a towel on your lap and on your belly just beneath your stoma in case the little rose bud starts burping up ..... xoxo
Don't use soap if you can get away with that, around the stoma I mean, ... wherever the tape and seal is going, it's best to use just water in most cases to wash..... no lotions..... ( sorry you probably already know all this, I don't get on this site near as much these days as I would like to, so I'm a bit behind in what's all happening in here ... )
Once you have your fresh pouch on and return to your bed, you can bring two fresh towels with you..... one for next to the bed in case you need to use it as already described..... the second towel is in case you'd like to tuck that under you, or if you lay on your side, just comfortably tuck that under your side.....
I hope some of this helps you........ keep trying different pouches, so many of us have different pouches that work best for us under our different skin conditions and different situations...... experiment....... and ask companies like Hollister and Convatec and others out there for any samples they can offer you.........

I wish I was there to help you.
There is a new Ostomate in my town and she is also having a terrible time with adjusting... she is an elder and I am gaining her trust and trying to help her and console her........

I've had my ileostomy since I was ten years old........ I am 47 now....... I've never let that little bugga stop me from doing anything I want to do and continue to live a very active life....... I hope you can learn to find more comfortable ways to cope as well...... feel free to contact me any time if you want to talk.

We're all in this together......... this is a fantastic site........ and we're all in the same boat, for different reasons,........ but we understand each other xoxoxo

Peaceful Night All !!

Much Love from Your Doe.............

Hi Pammers,
Several hours ago, I began writing you a response with a ton of helpful tips to get you through this crisis in your life. Then, I stopped, thought for a while, and erased everything. New ostomates are facing major changes in their lives and need a lot more than a cartload of good ideas to sift through. They need an experienced and successful ostomy wearer to enter their lives, up close and personal, for a few weeks or so to ensure they get off to the right start in several ways such as applying the product, adapting to the new lifestyle, developing wholesome attitudes, and getting on with their lives. It's a lot more than the support found in Alcoholics Anonymous, but there's a good parallel. I am thinking of the one-on-one mentoring offered to younger professionals by seasoned professionals who can assist in any transition. Like AA, there's no fee, only the good faith availability of caring ostomates. Unfortunately, most wound nurses or product representatives are helpful up to a point, but they do not always have the personal experience required for the necessary bonding and transitioning. Wounded Warriors knows the value of this kind of mentoring after serious trauma. I am not sure where I will go with this thought, but I suspect it has potential and can make this a better world for Pammers and other newcomers. It would be very helpful to hear what others think about this idea.

PB

Thanks to all for the advice and words of encouragement. It really is like family here. Pammer

Hi Pam, PB is right. Talking face to face with other ostomates is good, so if there is an ostomy club in your area, you might be able to get some good tips from people. Check with your local hospital, and they should be able to tell if one is in your area. Good luck.

Sorry for your despair. I've had my share, it's devastating to say the very least. As the day continues, I try not to think about it. It's been 3 years for me, guessing I'm used to the leaks and the sadness it will initially bring about. I tend not to fret so much over the nighttime leaks, the daytime ones are worse.

For prevention, a plastic mattress pad, as others have said, helps. Also, a towel nearby so you can immediately help yourself as you migrate to the restroom. Also, I've gotten samples and LOVE the Sure Seals. Call them and get samples. It's very sticky, like Tagaderm. I didn't get a skin reaction. It will seal in the leak better than any tape previously used. I cut it in half to apply around the wafer, then click on (have a 2 piece). Great for sports, especially swimming. No more waterproof tape!

Pam, have you tried wearing Depends at night? That has saved a mess many a time. Also, if you are having frequent leaks, you might want to meet with a WOCN to see if something needs to be changed. Sometimes things work for a while, and then for no discernible reason, they stop - guess to keep us on our toes!

With peace, Anyark.

Hey Pam, I used to have the leaking problem also. Then I bought a Stealth Belt. They are outta the states, southern part. It holds the bag sideways and close to the body. They are made of stretchy stuff, so it expands as it fills. I'm a welder and still doing it full time, and I've never had trouble since. I've rubbed up against steel and under trucks, getting caught on suspension, and it's all good. Wish you the best.

Pam, make sure when you change the bag, you only use water and not any wipes or anything with oil on it. Then, make sure the water is completely dry before you apply the bag. Maybe this will help. If it's a gas problem blowing up the bag and loosening it, then take a couple of Pepto tablets before bedtime. Hope this helps.

Have you tried jelly sweets? It thickens the output very successfully. I buy those from Waitrose (UK). It was a stoma nurse who gave me this tip. As a result, I only wear a stoma cap and squeeze out the solids, then put on a new cap. Hope this helps. I have to do this whenever I am on antibiotics for a urinary infection.
Regards
Barry

I am interested in this belt -- sounds like a good idea.

I also discovered that my bag needs emptying every 4 hours and when I am paying attention to that, it does not leak -- the pressure of extension from food/gas at night caused a few leaks along the seal. Certainly took me a while to figure it out but I am really all set -- I also use tape on the top portion if there is going to be any rubbing by clothing. I do have a soft but waterproof bed cover for protection. My old Lab sleeps nearby now and she wakes me and goes right back to sleep - best alarm ever!!

Hi Pammer,
I know how demoralizing it feels. I had gotten to 3-4 days wear time when I got a sore. Then it got infected and now the WOCN has me on different bags to relieve the pressure on the sore that is right up against my stoma. So there are days that I have had to change my bag 2-3 times...sigh.
One of the things that really helps control the damage at night is to use an old sheet doubled, then doubled again and laid across the bed like a draw sheet. Specifically across the area your mid-section crosses. That way if I have a mess I don't have to change the whole bed. Wearing a cotton night shirt also helps control the mess as a first layer of defense. All the other tips are good too so I won't repeat those.
I also find that the Coloplast Brava paste gives a better seal if used around the stoma opening edge. Have you tried wearing a belt for added snugness?
I drink water every time I empty my bag during the night. That way I will need to pee periodically and usually catch any leak before it gets too bad. Also, you will get to the point that you will, as a form of habit, lightly run your hand around the edge of your pouch while in bed. I instantly wake if I encounter dampness.
It will get better. You will get the hang of it, with the right product for you. It can wear you down. I KNOW! I find that keeping a sense of humor and positive attitude helps a lot. You are not your leaks, nor your stoma, they are just things to be dealt with. Do something nice for yourself. You deserve it. You are working through some tough stuff.....but you will become empowered. I know it doesn't feel like it when you are sleep deprived....but you WILL get through this. We are here for you.
BIG HUG!
L

Hi, I wanted to list a few items that have worked for me with no leaking.

I have an ostomy and ileostomy for 1 year now, and I had a lot of leaks in the beginning. I also have extra supplies I'm willing to donate; you'll just have to pay the shipping if anyone needs a little help with supplies. If you're asking why, it's because someone helped me. Hugs.


1. Securi-T 7502134 1 3/4 in 45mm urine bag

2. Securi-T 7832134 - the backing for this bag, no leaks at all and they really stick

3. Securi-T 7212134 1 3/4 in 45 mm for poo poo bag

4. Securi-T 7804134 - works really well with this bag

5. Securi-T No Sting wipes barrier protective dressing genairex 202400 - box of 20

6. Torbot Group - Skin Tac liquid adhesive latex-free 8 fluid ounces - This works very well with any ostomy or ileostomy appliances. I love it; it dries fast.


I hope this helps you. I get my supplies from EDGEPARK.COM. I added the item number so you can search if you or anyone needs any help, just send me a message. I'll do my best to answer.

Hammer, I have been using Hollister products for the past 6 months. At the beginning and even now, my worst fear is "springing" a leak. Thankfully, I have had no major leaks to date. I have a colostomy, so my discharge is more solidified than other ostomies. It is important that you consistently monitor/measure the size of your stoma and adjust accordingly. Due to my body shape, I use adapt barrier seals in conjunction with a 1-piece convex drainable pouch. I've tried Eakin seals, but I find this product doesn't work as well for me. Obviously, the key to stopping leakage is a positive seal, and therefore, my pouches also have an extra layer of tape around the pouch where it sticks onto my stomach. During bag changes, I ensure the area around the stoma is clean of all moisture and glue residue (using proper glue remover). I use stoma powder and then a skin barrier that helps the apparatus stick....once the bag is in place, I use a heating pad (with light pressure) on the area while lying down for about 5 minutes to ensure a positive seal. The heating pad is just warm. So far, so good. I hope this helps in some way....

Kolan

Sorry to hear that, I won't repeat the good advice already given but might guide you more towards prevention rather than reaction (post problem).

Here are some questions:

How often does this happen? Several times a month or once a year? What is your "acceptable" level of "failure" on this?

Is there a pattern that keeps happening? Is it food related? Is it drink related? Is it activity related? Is it related to the condition of your appliance prior to you going to bed? Is it related to the amount of sleep (or lack)?

Have you tried monitoring your quality of sleep with something like a "Fitbit Flex"? I know for me personally, after many years I became very aware of the condition of my appliance whether I was awake or asleep.

Also, try to see if there is a pattern to the "contents" of the bag. Gas, solids, liquids, as well as the cause of the leakage (barrier related, tape related, or seal related to a two-piece). If it's seal related, make sure there isn't residue in the seal part which prevents the two pieces from "clicking" together firmly all around.

Lastly, do you only experience this type of appliance failure when sleeping or has it happened when you're in your daily activities?

Just some ideas to think about how to isolate the problem.

-Wesley

Hi Pam, my suggestion would be the same to change other products.

I have tried at least ten different products before I found one that lasts for years. I think a stoma guard also helps.

Good luck.

MettaJo

Pammer, it has been awhile since you wrote about your leak issue. How is it going? I have some notes on leaks that I am attaching here.

Here are some ideas in the area of skin preparation, wafer products, and lifestyle. I also added a section on fashion (to benefit one of your more recent posts):

SKIN - don't use a moisturizing soap. If you cannot find one that suits you (Dial is good; Ivory may be good), try no soap at all - just as an experiment. You could also rub skin with degreaser or witch hazel.

PRODUCTS - a few things you could try:

Convex wafer - if your stoma is recessed (if your skin goes "in" around your stoma).

Seals (like Eakin) that you mold to your skin. I put a full ring around the hole of the wafer (my skin dips in around the stoma) PLUS a second layer elsewhere where my skin creases and dips. In other words, you have to mold that stuff to the shape of your skin. You don't have to go crazy, but put some seal material in the recessed areas. Paste, in my experience, dries hard and will not work as well.

Stoma collar - see YouTube video (https://www.youtube.com/watch?v=XjZPaUiNyck). I don't know anything about this, but it is something to look at and consider if it might work for you.

Stoma seal (very interesting) - YouTube video (https://www.youtube.com/watch?v=NHSEIO9s1ZU). Again - I don't know anything about this.

LIFESTYLE - before you go to sleep or go to an important function: don't eat/drink for hours beforehand, empty bag beforehand, take a couple of salt tablets.

FASHION - With the summer coming, I LOVE sun-dresses. Being skinny helps a lot and my bag does not show when it is empty. I also wear leggings with longer blouses over them - I just got a peasant blouse that I love. Also, skirts with elastic waistbands are great because you can check the bag discreetly. There are a lot at Macy's. If you get a puffy one, you can wear a tuck-in blouse. Bathing suits are tough so I use a skirt one, a bloused-over one, or one that is gathered or bunched to the side over my stoma. Bold prints and colors are good, and you can also wear an overshirt or skirt.

Question: Do you have leaks mostly when the output is "thin" like water or "thick" like whipped cream or thicker?

Good luck, Pammers. It seems like you have a lot of support from this site - you are lucky.

Pat

There is no excuse for leaking. I had the same problem and I sampled, sampled, sampled until I found some answers. Still have an occasional leak but they are rare. Don't eat much after 5 pm and try to eat a little fiber. I use Eakin Seals and also use a convex wafer. I also use a belt that keeps my wafer secure. Ostomy Armor is a great product but expensive.

Hi PrimeBoy, thank you for the great post. I completely agree with your entry. Most newbies need a mentor, even temporarily. Trying to figure out the ostomy stuff alone or with a non-ostomate is very frustrating and scary. When I had my surgery last year, I requested from the docs and nurses someone, anyone, with an ostomy to speak meet with me. But because of HIPAA, I was only connected with a wound care nurse. She was very good and kind, but she did not have an ostomy and did not know the day-to-day challenges or, better yet, tricks to make ostomy living less stressful. I wanted someone who was living the life.

Post-surgery, about one month later, I went to my first ostomy meeting and met several people who had ostomies. I really felt much better and more connected. Today, I offer my support to new ostomates. I gave my surgeon and GI permission to give my contact info to those possibly facing ostomy surgery. Like AA and Alanon, those who have walked the path before help those facing this new journey. Support and hope are very empowering. Have a great weekend. Thank you again. LH.

The thing to do is give your surgeon's receptionist a copy of the flyer.

I did, and they were very pleased and now hand them out to all their ostomy patients.

Ed

Hi LadyHope. When my GI broke the news to me that I needed a temporary ostomy, he had me spend a little time with his research assistant who was new personally to the ostomy world. She left me with a strong sense that things would be okay after a little practice. Some of the things we reviewed were definitely not the things males and females discussed in mixed company but we certainly focused on critical issues and procedures. Anyway, after I managed to function pretty well on my own, my GI asked me if I would talk to one of his new patients who is ostomy bound. I did, and I treasure all the help I received and offered to others as we adapted to a new style of during business as ostomy wearers. We must become our brothers' keepers to some degree and give our fellow ostomates the help and support they need to get their lives back on track.

PB

I am married but wear the belt that conceals an ostomy pouch. I wear flesh or black. Some folks find black sexy. It has not hampered my love life at all. If anything, it is better. I do not eat if we are feeling a little frisky or I might eat a few marshmallows to slow me down. Have fun!

Pammer - do you use a convex appliance? I used the regular flat one and kept having leaks, but since I switched to the Coloplast Assura Convex two years ago, I have had almost no problems. I wear it for a whole week (I change whether I need to or not), and it is really comfortable.

Good luck!

Sandi

Dear Pam, I don't know if this will be helpful, this is my first post ever on this site! First off - I changed to Convatech flanges and pouches. Then I recently found out that Hollister makes a barrier ring that is moldable and is 4 inches in diameter. I use it with my Convatech thingies. What a difference! My stomach is lumpy with age and a hernia. I have a deep crevice at my navel. I shape the barrier so it covers that crevice and smoothes out the lumps. The flange goes over that. I tape around the flange with 3M Medipore tape which I get on Amazon. My life has changed! I rarely leak and can sleep through the night. One other thing. Make absolutely sure the pouch is well attached to the flange. I put mine together before I put the flange in place. That way I can feel that there are no loose places. I usually go around two or three times to make sure. I hope this helps a little. PS. I'm 87. I've had my ileostomy for about 5 years.

Don't give up!!! Don't ever give up..... There are a lot of smart people out here. I am in CHI also.. I thought for the longest time I was the only one with this crappy (pardon the pun) problem. Ileostomy for 15 years. And I had a lot of problems in those years. But found through support you can have better days ahead!

Check out www.theamericanostomyclub.com for some good ideas for ostomy problems. It is a collection of problems and solutions for those of us that have issues and don't think there are solutions.

Why do we get topics from 2000 and earlier.... Can't we do something about the dates?